The Rare Life

Groundhog Days, Gradual Changes, & Deep Family Ties | Marci’s Catch-Up


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When you’re deep in the world of disability parenting, it’s easy to feel like every day is the same. The meds. The appointments. The routine that doesn’t seem to change much, even as the years go by.

In this episode, Marci returns to share what life looks like now, two and a half years after her conversation about grieving her daughter Freya’s intellectual disability. Sheopens up about the slow pace of progress, the grief that still sneaks up on her, and how, while parts of Freya’s disabilities are difficult, her family cherishes and celebrates Freya’s joy in the day to day.

We also talk about the messy emotions of school decisions, the heartbreak of communication barriers, and why disability has pulled Marci into the world of politics—whether she likes it or not.

If you’ve ever felt caught between acceptance and grief, you’ll feel right at home in this one.

Links:

Listen to Ep 114: Grieving Our Children’s IntellectualDisabilities + Facing Our Internalized Ableism with Marci Dunning.

Follow Marci on Instagram @ freyasluckyarm!

Follow us on Instagram @the_rare_life!

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Fill out our contact form to joinupcoming discussion groups!

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Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

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The Rare LifeBy Madeline Cheney

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